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Challenges and opportunities in conducting research with older adults with dementia during COVID-19 and beyond |
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| Authors: | Rashmi K. Sharma MD MHS Andrew Teng PhD Mary Grace Asirot MPH Jean O. Taylor PhD Soo Borson MD Anne M. Turner MD MLIS MPH |
| Affiliation: | 1. Division of General Internal Medicine, School of Medicine, University of Washington, Seattle, Washington, USA;2. Department of Biomedical Informatics and Medical Education, School of Medicine, University of Washington, Seattle, Washington, USA;3. Department of Health Systems and Population Health, School of Public Health, University of Washington, Seattle, Washington, USA;4. Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, Washington, USA;5. Department of Biomedical Informatics and Medical Education, School of Medicine, University of Washington, Seattle, Washington, USA Department of Health Systems and Population Health, School of Public Health, University of Washington, Seattle, Washington, USA |
| Abstract: | The coronavirus disease 19 (COVID-19) pandemic has created significant and new challenges for the conduct of clinical research involving older adults with Alzheimer's disease and related dementias (ADRD). It has also stimulated positive adaptations in methods for engaging older adults with ADRD in research, particularly through the increased availability of virtual platforms. In this paper, we describe how we adapted standard in-person participant recruitment and qualitative data collection methods for virtual use in a study of decision-making experiences in older adults with ADRD. We describe key considerations for the use of technology and virtual platforms and discuss our experience with using recommended strategies to recruit a diverse sample of older adults. We highlight the need for research funding that supports the community-based organizations on which improving equity in ADRD research participation often depends. |
| Keywords: | Alzheimer's disease and related dementias COVID-19 qualitative research racial and ethnic minorities |